Switiching from Imatinib to sprycel

Hi Ray,when I changed to Dasatinib my doctor said the standard dose was 100 mg but after reading  about people suffering with pleural effusions and other side effects I refused and said that would be too toxic for me .So my Doc agreed on 50mg but wasn't happy .New research says less is more but not all doctors keep up with research not even CML so called experts because I have had crossed words with a few of them.Well so far it's working for me and I am now on 40 mg much to their surprise .Your numbers are low so you could try 50mg if it doesn't work you can always go up better to start low first but it probably will .Dont be bullied it's your body and you don't want nasty side effects.Good Luck, Denise.

Hi,

My doc also wants me to switch to dasatinib from imatinib. However, when I read some papers I am not sure what advantage I can expect from it.

"However, while 2G and 3G TKIs present higher BCR-ABL1 inhibitory activity if compared to IM, they have failed to generate meaningful survival advantages for CML patients. Moreover, it is now apparent that, despite complete inhibition of BCR-ABL1 kinase activity, TKIs are unable to eliminate quiescent Leukemic Stem Cells (LSCs), as these cells are not “oncogene addicted” and therefore require alternative treatment strategies"

I have a bcrabl of 0,29% after 2 years, with 1 year on imatinib 600 instead of 400.

So you will start on 50mg ?

Keep me updated on how you are doing! I will make the change probably at the end of the month. I also want 50mg, but they advised me to take 140. I am not sure about that.

On the other side, being in CCyR is also fine. So staying on imatinib is, maybe, also an option. My haematologist has one patient on imatinib 400 for 11 years. Balancing between 0,1 and 1% bcrabl. No MMR.

Argearge,  I will start the 50mg Sprycel today.  Will update as I test.  Ray

Ray - keep us posted as you test. Will be interesting to see your PCR numbers drop from current levels while taking 50 mg dasatinib.

Testing monthly during your transition from imatinib to dasatninib is wise. Also - should your PCR plummet - (I have a suspicion it will), consider lowering dose further to 20 mg. You will minimize side effects - including side effects you do not necessarily feel and you will keep your immune system stronger as well. You can always increase dose should PCR not fall.

In my case, my doctor did not gradually drop my dose. He started me at 70 mg (never 100) which only lasted a week. When I restarted dasatnib, he restarted me at 20 mg. because of his knowledge and experience with the drug. My PCR levels fell dramatically on that dose and I have been at that dose ever since (3 years 'undetected'). Now I take dasatnib 20 mg every other day weaning myself off it in preparation for complete cessation.

One other note - in terms of progression free survival or dying from CML. The gold standard is CCyR - complete cytogenetic remission. CCyR is zero CML cells observed under the microscope which corresponds approximately to 1.0% PCR. As long as a patient is CCyR, they have the same progression free survival statistics as patients in MMR (or undetected).

Argearge. Good luck to you sure hope it works 

Denise. Thank you, I to feel those aches and pains

Scuba. Your one of the main reasons I decided to switch. Thank you for your knowledge and positive support. 

Hey Denise. What were your numbers prior to Dasatinib and after starting Dasatinib? My eyes are really swollen from imatinib, were yours?  If yours were swollen, did they go down?  I’ve been using eye lubricant and really helps.    I did have headaches Sunday through Wednesday.   None today.  The headaches were easily tolerated and didn’t last long.  A great day to you,  Ray

Why did you start at 600mg ? My dose was increased to 600mg after 1 year 400mg to sub optimal response.

Hi Ray,I was at 0.043% when I went on Dasatinib next blood after 3 months was 0.001% and after another 3 months was 0 yippee .Hope you have the same success ,and I touch wood I stay at 0.I had very hooded eyelids yes I didn't look like me I hated it ,but after only a few days they started going back to normal and I look like me again haha .I also had the dreaded rash this also cleared up right away  too ,the fatigue lessened and also the dreaded occasional diarrhoea went .I feel so much better on Dasatinib than Imatinib.Hope you feel better soon and I look forward to hearing about your journey on the downward trail ,Good Luck ,Denise.

Hi, Long story .I was at 0.4% when I was put on Dasatinib blood had gone up because I was on antibiotics for an infected insect bite but they didn't tell me it had gone down to 0.043% because test result hadn't come back yet .They said bloods arnt affected by antibiotics but I proved they are so they panicked and made me changer to Dasatinib  and put me through another bone marrow test I didn't really need.Hope that makes sense.

Pomegranate juice. Is this ok while on Dasatinib?   I read it’s 

not ok, then I read there’s no studies. Can someone clarify?

An update:  14 days now on Dasatinib, diarrhea is gone. The swelling in eyes is going down. Some eye redness is gone, but I started artificial tears same time as Dasatinib. Some cramps in toes still, but much easier. I’ve had some irregular heart rate. My energy seems more. 

Hey Denise.  Thank you.  I take magnesium 500mg at night.  Cramps are almost gone.  I have a better sense of well being since on this drug.  Started my Rokon yesterday, and its been over 3 years since I rode it.  I actually feel like hunting again and plan to go.  I miss the clean meats, venison and elk.  Since I can remember that's how we lived.  I hope and pray I can stay on the dasatinib as I'm wanting to do things instead of having to do things.  I'm having irregular heart rates almost daily.  I'm tracking it so I can send to cardiologist.  I've done a little research and about 7% of people get this.    Ray

Hi Ray,

I don't think I've ever heard of a patient juggling two TKIs at once. You normally find that someone will end up with one that works for them, but doesn't cause too severe side effects. Bosutinib is quite good in this regard.

David.

Hi Ray,

That sounds sensible. Ideally you want to see a CML specialist, or at least someone who deals with a large number of CML patients and is up to date with treatment. We see, too often, CML patients being treated by doctors who are not up to speed on the latest developments in the management of CML. 

David.

Hi Ray,

Your experience changing from imatinib to dasatinib is very similar to mine.  I experienced irregular heartbeats when starting dasatinib.  The worst was when I had an episode of tachycardia that lasted for about an hour.  The dasatinib did bring my BCR/ABL down.  I tried 20mg per day and it still gave me a little bit of trouble.

It would be great if you can get in to see Dr. Druker at OHSU.  I saw Dr. Heinrich there for a while, but it was more of a hassle going into Portland so I'm back at my first onc in the 'burbs.

It's been nearly three years ago, so my memories aren't too fresh.  IIRC it was only a few days before I noticed the irregular beats.  I started at 100mg/day, then went down to 50 for maybe a week and a half before taking a break from dasatinib and going back to imatinib for a while.